Sorting through the lost and found: Are patient perceptions of engagement in care consistent with standard continuum of care measures?

Authors

Amanda D. Castel, Milken Institute School of Public Health
Wenze Tang, Milken Institute School of Public Health
James Peterson, Milken Institute School of Public Health
Meriam Mikre, Milken Institute School of Public Health
David Parenti, The George Washington University
Richard Elion, Whitman-Walker Health
Angela Wood, Family and Medical Counseling Service, Inc.
Irene Kuo, Milken Institute School of Public Health
Sarah Willis, Milken Institute School of Public Health
Sean Allen, Milken Institute School of Public Health
Paige Kulie, Milken Institute School of Public Health
Ifeoma Ikwuemesi, Milken Institute School of Public Health
Kossia Dassie, Milken Institute School of Public Health
Jillian Dunning, Milken Institute School of Public Health
Brittani Saafir-Callaway, District of Columbia Department of Health
Alan Greenberg, Milken Institute School of Public Health

Document Type

Conference Proceeding

Publication Date

5-1-2015

Journal

Journal of Acquired Immune Deficiency Syndromes

Volume

69

DOI

10.1097/QAI.0000000000000575

Keywords

Clinic records; Continuum of care; Engagement in care; HIV; Self-perceived; Surveillance

Abstract

Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved. Background: Indicators for determining one's status on the HIV care continuum are often measured using clinical and surveillance data but do not typically assess patient perspectives. We assessed patient-reported care status along the care continuum and whether it differed from medical records and surveillance data. Methods: Between June 2013 and October 2014, a convenience sample of clinic-Attending HIV-infected persons was surveyed regarding care-seeking behaviors and self-perceived status along the care continuum. Participant responses were matched to DC Department of Health surveillance data and clinic records. Participants' care patterns were classified using Health Resources Services Administration-defined care status: in care (IC), sporadic care (SC), or out of care (OOC). Semistructured qualitative interviews were analyzed using an open coding process to elucidate relevant themes regarding participants' perceptions of engagement in care. Results: Of 169 participants, most were male participants (64%) and black (72%), with a mean age of 50.7 years. Using self-reported visit patterns, 115 participants (68%) were consistent with being IC, 33 (20%) SC, and 21 (12%) OOC. Among OOC participants, 52% perceived themselves to be fully engaged in HIV care. In the previous year, among OOC participants, 71% reported having a non-HIV-related medical visit and 90% reported current antiretroviral use. Qualitatively, most SC and OOC persons did not see their HIV providers regularly because they felt healthy. Conclusions: Participants' perceptions of HIV care engagement differed from actual care receipt as measured by surveillance and clinical records. Measures of care engagement may need to be reconsidered as persons not receiving regular HIV care maybe accessing other health care and HIV medications elsewhere.

APA Citation

Castel, A., Tang, W., Peterson, J., Mikre, M., Parenti, D., Elion, R., Wood, A., Kuo, I., Willis, S., Allen, S., Kulie, P., Ikwuemesi, I., Dassie, K., Dunning, J., Saafir-Callaway, B., & Greenberg, A. (2015). Sorting through the lost and found: Are patient perceptions of engagement in care consistent with standard continuum of care measures?. Journal of Acquired Immune Deficiency Syndromes, 69 (). http://dx.doi.org/10.1097/QAI.0000000000000575